Lipomas and PTEN Mutation

lipomas(Not the most flattering picture of me, but I’m not big on selfies anyway. At least my Pusheen shirt looks good!)

So I recently had yet another surgery. Yes, another one.

There was a palpable tumor in my abdomen. Due to its location, hardness, and size–along with the fact that it had suddenly become painful–my oncologist thought it should be removed and biopsied.

As the surgeon could not positively identify the tumor as a lipoma, a benign fatty tumor, she refused to remove it in the office, which meant another full surgical procedure.

I was going to be sedated no matter what, so I convinced her to remove all of the lipomas from my left arm. Unfortunately the ones on my right arm will have to wait another year so that the risk of lymphedema is lessened. (According to my surgeon, if a breast cancer patient reaches the 2-year mark after a bilteral mastectomy without having lymphedema, then the risk for problems in the future goes down to 10%.)

All in all, my surgeon removed 23 tumors from my left arm and one from my abdomen.

Lipomas are an annoying part of having the PTEN mutation. While they are not cancerous, they are unsightly, and they can create pain if they grow too large or are in an awkward part of the body.  For example, in 2000, a lipoma suddenly began growing in my right breast. In the space of just a few months, it grew to the size of a baseball, so large that I could only wear loose t-shirts until it was removed. The pain and embarrassment from that lipoma are still with me to this day.

Honestly, I hate lipomas.

I have lost track how many of these tumors I have had removed over the years. The pain and expense of all of these procedures have reached ridiculous proportions.

This is the life of someone living with Cowden syndrome. For us, it’s much more than an increased risk for various cancers. It has a widespread effect on our bodies and our well-being. Plus the enormous toll on our finances to continually support numerous surgeries and various treatments.

We become a curiosity and professional pincushion. Such is the life of a PTEN’er.

 

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